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Wednesday, September 25, 2013


1st International Trigeminal Neuralgia Awareness Day on October 7th 2013.

Monuments and Bridges throughout the globe will turn teal for the day (teal is the color assigned to tn)
The Oamaru Opera House in New Zealand, a falls in Canada, the Boston Zakim Bridge, Terminal Towers of Ohio and The Mid Hudson Bridge New York among others..

Sufferers of Trigeminal Neuralgia (TN) are living with what is called "the worst pain known to man" and "The suicide disease".
The trigeminal nerve is a cranial nerve that gives sensation to the face.

When someone develops trigeminal neuralgia the sensation becomes pain. This pain can effect certain parts of the face. For most people it is only one half of the face that is effected but for others it can be both sides.

The majority of patients have pain that is in the jaw and mouth area. Often they are misdiagnosed and have extensive dental work, including multiple tooth extraction which is of no help in this disorder. Other patients may have the pain in the middle of their face, forehead and eye area, in both, or in all three.

For many victims the pain comes out of the blue, the pain often described as a stabbing sensation, electric shock, a lightning bolt through your skin. The pain usually lasts for only a few seconds to several minutes. There is no visual evidence of trigeminal neuralgia, such as swelling or redness. Diagnosis is reliant on the description and area of the pain.

Age used to be a determinate because it is more common in women over 50 but it can be found in all ages, including children, and in men as well as women.

Treatment usually begins with anti-convulsants which may stop or reduce the pain. If these do not work there are a number of neurosurgical options but these often carry a high degree of risk/side effects.

The majority of people with this disorder live with some level of the pain for all of their lives. For others it is not only debilitating but disabling.

Because it is considered a 'rare disease" there is a serious lack of funding. As a result there is still no agreed upon cause. The lack of financial resources also means there is a dearth of research into finding a cure.

The lack of funding also means there is no accurate data on the number of sufferers globally. It is estimated that 1 person in 15 -20,000 has trigeminal neuralgia and 4 to 8 million sufferers worldwide.

TRIGEMINAL NEURALGIA AWARENESS DAY, October 7th 2013, is a day to not just raise awareness, but to raise money for research as well through the selling of teal ribbons. These are availale for sale at The profits are to be donated to The Facial Pain Research Foundation’s research efforts for a cure of this devastating disease and to TNA-The Facial Pain Association’s awareness efforts.

Tuesday, September 17, 2013


I was at church and someone started taking pictures with a flash camera.

My eye cannot tolerate bright light, especially when I am unprepared for it. My entire body recoiled, pain searing my eye as the flash lit up the sanctuary.

Fearfully I kept my head down, staring into my lap. Minutes passed and no more photos were taken. I felt safe enough to chance looking up.

691px-Fawn_in_Forest_editI found myself constantly checking the pews, feeling like a trapped animal. Where is he? Where will the danger come from, left, right, the middle? Will it happen again? When? Will it be soon?

How often do we feel like this? How often is it that the predator is not someone or something, but the pain itself?

It’s a good day. I am reading, fooling around on the computer, or at a store shopping. Doing things that are my triggers. My eye is doing well, feeling pretty good. The pain is not being set off, at least not enough to make me sit up and take notice, take a pill, or stop.

I continue what I am doing, not paying attention. Suddenly the pain comes. It forces me to stop, screaming at me, “Ha! Got ya!”

I am the prey, sipping gently at the stream, not paying attention, just being. The pain is the predator, hiding in the bushes, waiting until I am most vulnerable, relaxed, unprepared.

I think the pain angers me the most when it is set off by things I cannot predict.

It is bad enough when I do the behaviors and actions that I know will cause the pain to start, to build up, and get to the point where it is uncontrollable. I can at least blame myself for the pain being set off or made worse.

It is the complete lack of control over things like the flash of the camera that is harder to deal with, because then it is not only the pain over which I have no rein. It is over that which set it off.

Golf Pass

For many of us, we know exactly what makes the pain worse and what makes it better. We strive to be the overlords of those things. But life is uncertain, and so too are the unexpected triggers.

An animal of prey does not take itself to task for getting in the way of the predator hidden in the bushes. He runs as fast as he can to get away. He’s glad when he makes it. Sometimes he is not fast enough and gets hurt. The lucky ones do not get killed.

They say what doesn’t kill us makes us stronger. The pain, as horrendous as it is, does not kill us.

Even when triggered by that which was hiding, even when we get caught and the pain is very bad as a result, it does not kill us.

We cannot control everything that makes our pain worse. But we can accept that sometimes there is a predator called pain. And even when we’re caught in its grasp we do not have to stay there.


Reprinted from:

Friday, September 6, 2013


September is National Pain Awareness Month. In Pennsylvania it is also Women In Chronic Pain Month.

The latter is an easier concept. Bringing attention to the disparity and gender bias in treating chronic pain in women vs. men.

To my mind, the former is much more complicated.

First if all, I wish they had included the word “chronic” in the resolution and not merely the word “pain”. Everyone is in pain at some time or another. The issue is much greater than that. It goes directly to the kind and amount of research and research funding, as well as the treatment of those living with chronic pain.

There are many disorders and diseases with pain as the main or sole complaint. These are some of them: cranial nerve neuropathies (such as trigeminal or glossopharyngeal neuralgia), peripheral neuropathies, including phantom pain, CRPS (chronic regional pain syndrome), many of the auto immune disorders such as rheumatoid arthritis, and Lupus, and the list goes on and on.

Many of them have treatments, medications, and possibly surgeries, that are specific to the diagnosis. The one common denominator, absent the pain, is the use of prescribed opiates. Codeine, Vicodin, and others are prescribed mainly as an analgesic, since all they can hopefully do is anaesthetize the pain.

Many of us who live with daily and often constant pain tend to look at it as one main category: chronic pain. But putting it all in one basket or one name makes it harder to accept the difficulty in finding an appropriate treatment. There is not and probably cannot be just one answer, because there are too many disorders as the primary cause.

I have to admit I get frustrated when I see attention and publicity paid to a specific disease such as fibromyalgia or CRPS. I immediately think but that is only one illness, what about the rest of us?

My trigeminal neuralgia pain is not the same as the pain of someone who has CRPS or fibromyalgia. Of course it is different. Yet there is a debate ongoing as to whether chronic pain is a disease in and of itself.

How can it be a singular disorder? Pain, after all, is a symptom, a sign. It is not an entire entity.

But boy, I sure wish it was. Research and funds could be coordinated with one single goal; relieving the chronic pain of an estimated 100 million Americans.

It would be so easy, so wonderful to have the one- size- fits- all answer. It allows for hope. If all the money, all the studies and research were directed towards the one endpoint — the chances of a cure would be greater. Instead it is scattershot towards the individual illnesses.

It is National Pain Awareness Month. We need to bring attention to the month, to the numbers of people living with pain, to its disability and horrors. It is a time to announce the ills that cause the pain. It is also a time to remind ourselves that the answer may be a longer time in coming then we wish. The upside is that the research is ongoing for the singular illnesses.

And in that, there is hope.
Reposted from my column: